Please help! ileostomy reversed Dr now wants Perm Colostomy

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StupidAssCancer
Posts: 69
Joined: Sun Sep 29, 2013 9:24 pm
Facebook Username: Alys.Geertsen
Location: Utah

Re: Please help! ileostomy reversed Dr now wants Perm Colost

Postby StupidAssCancer » Mon Apr 14, 2014 11:57 pm

Rick,
Thank you! I think a guys is referred to as GI Joe butt :)
I'm just so torn on which type to get and what are the benefits of one over the other, risks, ect of that nature. I know I want a colostomy, not an ileostomy however which one I'm clueless! I do like the idea of not having any leakage. That I totally would love! :)
xo,
Alys
Stage 3c Colorectal Cancer
Surgery March 2013 Jpouch Temp Iliostomy
May 2013Chemo Infusions 5-FU Oxi Lev-Allergic
Radiation w/Xeloda Chemo-Allergic
Oct 2013 Reversal of Ostomy Nov 2013 Perm Ileostomy
Feb 2016 Ostomy collapsed moved to other side
Jun 2016 colon removed permanent ileostomy

smudgesicle
Posts: 125
Joined: Fri Mar 07, 2014 3:23 am
Facebook Username: prue.robson
Location: Australia

Re: Please help! ileostomy reversed Dr now wants Perm Colost

Postby smudgesicle » Tue Apr 15, 2014 6:38 am

What timing! My surgeon briefly discussed these two options with me today. From my understanding a loop colostomy would be a slightly smaller op (one wound instead of two) and would mean you could try reversing again down the track if you wanted to but you risk butt leakage. Did you experience leakage when you had your ileostomy? My surgeon said it was likely to be less than that and I barely had any. Pros for the total end colostomy would be no butt leakage but it's a bigger operation.

I'm sure there is more to it than that so I'm keen to hear from those who have experienced either surgery too.
dx May '13 @ 29
RC T2N1bM0, Stage IIIA
7/13 chemoradiation
9/13 ULAR (pCR) & right hemi due to large "precancerous" appendiceal tumour, temp. ileo
11/13-5/14 5FU, 24 rounds
1/14 SBO & takedown
8/14 NED
9/14 perm. colostomy

User avatar
StupidAssCancer
Posts: 69
Joined: Sun Sep 29, 2013 9:24 pm
Facebook Username: Alys.Geertsen
Location: Utah

Re: Please help! ileostomy reversed Dr now wants Perm Colost

Postby StupidAssCancer » Tue Apr 15, 2014 1:05 pm

Yes that was kinda my surgeons speech. Ones a bigger surgery... However I get that but is the outcome and quality of life better? Frustrated as I don't know... You would think the surgeons could give us more direction.
Stage 3c Colorectal Cancer
Surgery March 2013 Jpouch Temp Iliostomy
May 2013Chemo Infusions 5-FU Oxi Lev-Allergic
Radiation w/Xeloda Chemo-Allergic
Oct 2013 Reversal of Ostomy Nov 2013 Perm Ileostomy
Feb 2016 Ostomy collapsed moved to other side
Jun 2016 colon removed permanent ileostomy

NWgirl
Posts: 6659
Joined: Sat Feb 02, 2008 3:24 am
Facebook Username: Belle Piazza
Location: Battle Ground, Washington

Re: Please help! ileostomy reversed Dr now wants Perm Colost

Postby NWgirl » Tue Apr 15, 2014 1:15 pm

I told my surgeon I wanted a Barbie butt so I wouldn't have leakage. She said she wouldn't do it because I'd had radiation - which literally makes the tissue 'hard' down there and best to leave it all alone unless there was cancer there - which in that event she would of course remove it. I trust her judgement so I said okay.

As it turns out, I have never had any leakage and I think I'm going on 2-3 years now with the colostomy. I think what saved me is that because I had radiation it basically killed off a lot of those tissues that may have caused the leakage stuff. Just my own theory - I've never really talked to a doctor about it. But in any event, for me, no problems.

What I tend to hear from folks who have had the Barbie Butt (or Ken butt or GI Joe butt); isn't so much about leakage but about the pain they have in sitting and adjusting to all that - even months or years later. I think I'd go with what my surgeon felt was the best option medically speaking - based on individual circumstances - and hope for the best.

It's like when we talked about whether the surgery could be done laproscopically and she said she just wouldn't know until she got in there - especially because she had hernia repair mesh and scar tissue to work around.

So many unknowns - I know. Hoping for the best possible outcome.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

smudgesicle
Posts: 125
Joined: Fri Mar 07, 2014 3:23 am
Facebook Username: prue.robson
Location: Australia

Re: Please help! ileostomy reversed Dr now wants Perm Colost

Postby smudgesicle » Fri Apr 18, 2014 2:32 am

Belle, does that mean your colostomy is a loop or an end colostomy? My surgeon keeps referring to a loop colostomy if you don't have the barbie butt but the ostomy booklet from the WOCN says you can have an end colostomy also.

Interesting theory about the radiation. I only had one week of butt discharge when my ileostomy was fairly new and then never again. I'm hoping that's an indication of what I'd experience with the colostomy.
dx May '13 @ 29
RC T2N1bM0, Stage IIIA
7/13 chemoradiation
9/13 ULAR (pCR) & right hemi due to large "precancerous" appendiceal tumour, temp. ileo
11/13-5/14 5FU, 24 rounds
1/14 SBO & takedown
8/14 NED
9/14 perm. colostomy

Jachut
Posts: 1137
Joined: Mon Sep 26, 2011 11:16 pm
Facebook Username: hutchinson@aanet.com.au

Re: Please help! ileostomy reversed Dr now wants Perm Colost

Postby Jachut » Fri Apr 18, 2014 2:52 am

My colostomy is a loop even though for me its permanent - my pelvis too scarred from radiation to attempt dissecting out an end colostomy let alone remove my dysfunctional pouch. I found it a really easy surgery - laparascopic and i was certainly running again within 3 weeks. The worst part of it was my angry intestines - gas and loud noises and explosions. I knew to expect this so I told work Id be off for six weeks.

Radiation did a number on me hence the colostomy but interestingly frequency and continence were never issues and since my colostomy Ive certainly never had any bypass or even passes any mucous. But I do get uncomfortable tenesmus when Im having a bowel movement, my family think its nuts that I still go and sit in the toilet for half an hour!

ScottieG
Posts: 1
Joined: Sun Sep 28, 2014 10:30 pm

Re: Please help! ileostomy reversed Dr now wants Perm Colost

Postby ScottieG » Sun Sep 28, 2014 11:14 pm

Hi (StupidAssCancer) Alys,

I'm sorry you are going through this hell. I irrigate everyday and it is not a life changer really, don't stress if you end up going this route. I am 41, fit and was in a real battle re bags etc but the irrigation has proven to be on the whole virtually the same as it used to be, so to speak. I will give you a few insights if I could to put you at ease in case you go down this track, or looking at your post date you might already be there.

I had lower rectal cancer diagnosed last July '13, Xeloda chemo and radiation in Sydney, Australia up until surgery early Dec. '13. One of ten lymph nodes had a bug in it so they carpet bombed me with IV chemo to ensure no stragglers were left. So far so good. I have not had to deal with the issues of reversal that I have read in your post, what a nightmare that is.

As soon as chemo finished I started irrigating. I do it every morning, I think every second day is just too long, and a bit gross with all that being kept inside. Key points:
- it takes me literally 30 minutes at the very outside to do, not the 45mins to 1hours I had been told
- it is very straightforward
- i use a Coloplast plug which doesn't balloon under a shirt or business suit like a bag with gas in it does
- the plug and stoma caps have charcoal filters to greatly minimise gas smell
- I run, fly light aircraft, Crossfit, surf, ski and a lot of open water and pool swimming without any issue, certainly far less issue than I had with a bag

I irrigate in the morning, it really takes only a few minutes longer than it used to (pre butt removal!). If you are organised, all the bits and pieces will be in the bathroom, I run the hot tap, stick on the irrigation cone into my stoma to flood your insides (5-10 mins max), grab the morning paper (whilst seated on the toilet), don't finish articles because the process of outputting is so quick (5-10 mins max), put a peg on the end of the bag, jump in the shower. Occasionally some minor output will come out into the pegged-off bag, but by then you have virtually finished in the bathroom, rip the bag off, use a stoma cap or now I use a plug and don't touch it until the following morning.

A caveat is that when you have eaten a dodgy taco or curry, you will know about it so I put a larger stick on bag, some tissues and a small garbage bag into a slim camera case and keep it with me. The runs tend to happen when you are out to dinner don't they. A camera case is a good disguise I find.

We are currently on holiday in Hawaii, I didn't want to use a plug or a bag at the beach, so I bought some Band Aid waterproof sticking plasters. My self esteem has rocketed, no one would ever know I had a stoma. The band aid just covers the stoma, but the point is the chance of a leak is now so minute that If I did have a leak then it would be minor and a quick run to the car to get the larger bag and away you go. Diarrhoea episodes are not fun but they have been very rare i.e. once every maybe 5-6 weeks. Before irrigating i bought a "Stealthbelt" which covers the bag for when you are at the beach or a pool or the gym. They are brilliant, Google their site.

Hopefully you don't have to have the surgery, but if you do it is a nuisance but equally not a big deal really, much better than the alternative in my case.

Call out if you want to discuss. I might put together a YouTube video I think, as gross as it is, it might throw out there some things that work for me.

Regards,

Scottie

Jachut
Posts: 1137
Joined: Mon Sep 26, 2011 11:16 pm
Facebook Username: hutchinson@aanet.com.au

Re: Please help! ileostomy reversed Dr now wants Perm Colost

Postby Jachut » Mon Sep 29, 2014 2:13 am

Chiming in again after a bit over 12 months with my colostomy. Still going strong, no regrets whatsoever. Saw my surgeon recently and he mentioned that I have probably a two year window to reverse. I was gobsmacked. There is no way I would ever even consider reversing again.


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